CLL Topics in the News

Date: August 2, 2006

Some of you have brought the article published in the Washington Post to my attention, since CLL Topics was mentioned favorably in it. This is the saga of a reporter who went looking for medical information on the Internet, when one of his family members was diagnosed with CLL. You can read the full article by clicking on the link below. I decided to write to the reporter, Craig Stoltz (his email address was at the bottom of the article). I thought you might like to see what I said to him, and therefore attached my letter (below). If you feel so inclined, he may appreciate hearing from other readers of his article as well.Link to Washington Post Article

One step at a time, we are beginning to be noticed, being heard and having an impact. Our biggest source of strength is our grassroots support from you folks. Nothing we do on CLL Topics will be of any value without it. Thank you for your unwavering support, it is truly the wind beneath our wings.

I read your article of August 1, 2006 in the Washington Post with great interest. Thank you for your kind references to our organization, CLL Topics, Inc.

Please allow me to introduce myself and the group I represent. I am a “CLL spouse” - my husband was diagnosed with CLL in the summer of 2001. Five years ago, the path you took was a lot more frustrating - there were far fewer sources of credible and understandable medical information relating to CLL. My background as a researcher and scientist helped, and I spent every waking moment reading every article I could find in the professional journals. I still do. CLL Topics grew out of my desire to share what I have learned with other patients and their families. I am the Founder and President, as well as the science writer. PC, my husband and CLL patient in our family, is our editor and webmaster. We work harder on this labor of love than we did when we both had challenging professional careers.

We are now the leading Internet-based, patient run Chronic Lymphocytic Leukemia (CLL) education and support group. We are a fully volunteer based and non-profit organization. Our website www.clltopics.org gets more than 30,000 visits every month from CLL patients all over the world. We try to provide our members with well-documented reviews of cutting edge CLL research, clinical trial information, prognostics and therapy options, as well as explain the complex science in lay-person language. By a process of self-selection, our cohesive membership tends to be well informed, pro-active in taking charge of their own health care needs, and more likely to be interested in learning about and participating in new clinical trials in the management of their disease.

Using patient donations (we refuse money from anyone even remotely connected with the healthcare industry), we have funded clinical trials that are of interest to our patients, especially those that are not likely to get funded by drug companies. Our reviews have significant impact on clinical trial recruitment, one of the major hurdles in any clinical study. Clinical trials that we review favorably tend to get “sold out” very quickly! We have begun to influence and change the way our patients are treated. We review and bring to the attention of our patients “Best Practices” published in reputable journals and acknowledged experts, and encourage our patients to take hard copies of these full text professional articles to their local oncologists. We think of this as CME (Continuing Medical Education) from the bottom up, the new paradigm for our internet age. Many hundreds more oncologists are getting to hear about the latest advances from their patients, even if they don’t take the time out of their busy practices to go through formal CME programs.

Thank you for your thought provoking article. There is a lot of junk and “snake oil” on the Internet, but there are also serious efforts to build web-based patient communities like ours. If you have any additional comments on our website, we would be most interested to hear them.

Yours sincerely,

Chaya Venkat

Dr. Chaya Venkat
President, CLL Topics Inc.
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